23andMe’s Community Wants to Help, CEO Tells Genomics Researchers

At a genomics conference in February, 23andMe CEO Anne Wojcicki took the stage to make the case for the scientific importance of her consumer genetics platform. Wojcicki still has a grand vision for how the service could help advance our understanding of human health, even as she acknowledges that recent restrictions imposed on the company by the FDA have left her more cautious about growth plans for 23andMe—especially regarding its expansion beyond the U.S., where other regulatory agencies’ rules on clinical testing have to be taken into account.

Her vision relies on changing scientists’ and clinicians’ views of the humans they study, Wojcicki told several hundred genome researchers at the Advances in Genome Biology and Technology meeting in Orlando. Citing a 1961 survey in which more than 90 percent of doctors said they would not tell patients their diagnosis if they were found to have cancer, Wojcicki said that paternalism remains a serious problem in research and medicine today. She argued that patients should be thought of as partners, not as research subjects, and contended that many of her company’s 1.2 million customers are willing and eager to make a difference in healthcare.

Many of the attendees I spoke at the conference with were surprised by Wojcicki’s data: 80 percent of customers opt in to participate in research, and thousands fill out emailed research surveys within a day of receiving them. The average customer contributes to more than 200 studies, either online or through the mobile app. This large consumer community is upending the traditional research presumption that people don’t want to know their results, Wojcicki said. They want to be studied, they want to drive progress in biomedical research, and they very much want to know about themselves.

Having attended this conference for more than 15 years, I can say that speakers from direct-to-consumer services are a rarity. Wojcicki wasn’t there by popular demand; she was there trying to drum up interest in using the 23andMe platform among some of the best genome scientists in the world. She spoke about studies to find new biological mechanisms that could be targeted with drugs, or people with ultra-rare genetic variations that may be important in understanding biology—studies that would be challenging for most scientists to launch because of the difficulty in signing up enough participants. At 23andMe, Wojcicki asserted, the participants are already there, and now it’s just a matter of asking the right questions.

The company will be launching new tools soon, such as cognitive screening tests that customers could take, that will allow more researchers to benefit from the community. Twice a year, 23andMe chooses five to 10 research partners for new studies. While future scientific discoveries will ultimately tell the tale, Wojcicki argued that this convergence of big data and engaged consumers has created a new opportunity that could benefit researchers and patients alike. From my vantage point, it was an argument that the skeptical-by-nature scientists were taking seriously. Especially in an era of limited government funding, this opportunity seemed to be welcome news among researchers looking for new ways to make sense of human health.

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Deborah

Good afternoon,

While this may be true on their books, others may point out that there is a large portion of testers that do not participate in DNA Relatives, which could be interpreted as extremely misleading. It would be very interesting, indeed, to see the numbers between total testers and those participating in DNA Relatives. 23andMe should be transparent and release those numbers.

Bravo to Anne for pointing out the paternalism and control factors. People most certainly do want to know their data and are getting tired of dealing with the middleman – doctors. The FDA hamstringed this company and it had to change its business model. Too bad it couldn’t have been left alone.